Since my diagnosis of FrontoTemperal Dementia some years ago, I have come to see that the concept of choice in my care path is an illusion. Much of our traditional health and care system is based on a model of “we (the medical ‘professional’) know best and no questions are allowed without notice”. Recently I have had cause to seek the assistance of several medical professionals from specialist doctors to some allied health professionals. (I would like to point out at this point that I have found the medical professionals I interact with on a regular basis to be very good, caring individuals who do take time to listen and adjust their procedures to suit.)
The understanding of the complexity and realities of dementia that these “professionals” have is not only wrong but dangerous. Yesterday I had cause to visit a nurse. She denied that my dementia was relevant to her treatment regime, though at this point it was impacting significantly on our interaction. She suggested that if I didn’t do as she said I would most likely die of a stroke or heart attack in five years. I suggested that such a death was likely preferable to the inevitable one I am facing as a result of dementia. At this point she told me I was wasting her time and placing obstacles in her path. I left, having gone into the appointment optimistically, I came out suicidal.
Kate Swaffer has given us the term “prescribed disengagement” to describe our post diagnosis treatment. I would add to this “prescribed” pathway “isolation, incarceration and incineration”. Medical treatments are denied us, we are socially isolated by stigmas, what care we are given is often aimed at keeping us “secure”, and ultimately we face an untimely death.
Where is my choice?
Living in a regional centre, alternative specialist medical practitioners are generally several hours travel away and are not a viable alternative. Given the local experience, is it worthwhile putting in the effort to seek alternatives outside the local area?
Similarly, looking at the options that will likely be available for my care in the future, I see none. I see the Aged Care sector and an emerging NDIS sector clambering for my dollar, but not offering me any form of care that I find appropriate. If I am to be considered a “consumer” then I need to be offered “informed choice”. Currently, information is very shallow and often deceptive and useless, as it doesn’t inform me on choices relevant to my needs. I would like to add here I mean my needs, not the needs perceived by others. Personally I consider that taking a “consumer oriented” approach to health and health care is morally wrong and contradictory to what these sectors should be striving to achieve.
One thing is clear to me at this stage. Based on the care options I see today, any choices made for my care in the future will not be acceptable to my world view today. No matter how well intended or informed these decisions may be, I will not accept them and indeed may make it my intent to overturn them.
How can things be improved? You have asked for our voice, now you need to listen. We have passion, now we need compassion and understanding.
Dennis Frost will be speaking at the Strengthening Dementia Strategy conference in Sydney this May. Book soon to secure early bird rates.